Women and HIV

By 1997, women accounted for almost 20% of all diagnosed AIDS cases in the United States and more than 50% worldwide. The U.S. numbers may under-represent the real percentage since many women are not tested for HIV unless they become pregnant or ill. Over the past several years, the clinician and researcher perception of individuals "at risk" for HIV infection has begun to change to include women. However, this change in thinking is a slow one and research specific to and inclusive of women with HIV is just starting in many arenas. Fortunately, there are many similarities in the treatment and care of both men and women, and many of the recent advances in our understanding of HIV and the disease process apply equally well to both.

A common rumor that many HIV-positive women have heard is that women with AIDS die faster than men. This is simply not true. What is true is that, in general, people with HIV who do not access services and lack competent medical care die faster than people who take an active role in their health care and work with a doctor or health care provider experienced in managing HIV disease. In fact, in the study that originally showed this difference, women appeared to die faster until the researchers went back and figured out who had access to health care and other services. Those (men and women) who had health care and support services were less likely to become ill or die, primarily because they knew their HIV status earlier and were able to prevent illness rather than treat it. Unfortunately, many women find out about their HIV status later in the disease process than men and thus miss the opportunity to take many of these preventative health measures. The good news here is that, biologically, women are not at greater risk for progressing to AIDS or dying. Women can and should have the same chance to survive and thrive as men living with HIV and AIDS.

The goal of this discussion paper is to provide readers with some of the known health-related issues uniquely affecting women living with HIV disease. There are many topics common to both men and women that will be mentioned but not covered here, primarily because these are addressed in other Project Inform materials. To help sort out the general distress and confusion which often accompanies a new HIV diagnosis, Project Inform provides a Discussion Paper called Day One. Day One helps readers understand the basics of HIV disease and what being HIV-positive means, while also introducing topics ranging from antiviral strategies to specific drug information that are later covered in great depth in other Fact Sheets and Discussion Papers. For further information or Fact Sheets on these and other topics, contact the Project Inform Hotline.

As soon as a person receives an HIV diagnosis, he or she is confronted with many choices. Some of the most complicated decisions center on HIV treatments. The world of treatments for HIV is a big one, and it is getting bigger every day. It can be so intimidating many people choose not to approach it until they become ill. But treatments are tools, not enemies, in this battle. In the long run, it is important to be informed about the various treatment options because this kind of knowledge gives you the power to decide for yourself how and when you will begin treatment. As long as you are aware that not using therapy today may reduce the ability to rebuild the immune system tomorrow, that can be an informed and empowered decision. There is no one absolutely `right' way to treat HIV, only the way that is right for you.

One of the biggest hurdles for a person with HIV can be changing his or her mentality about treatment. In our society, taking treatments is something that is done when one is ill or has bothersome symptoms. HIV disease calls for a different medical response, however. People in the early stages of HIV disease often have few if any obvious symptoms, but their immune systems are nonetheless suffering a gradual decline. Up to a point, the immune system suffers in silence, giving no sign of its distress. Eventually, however, the damage becomes serious and dangerous infections begin to break through our immune defenses. Some of the damage to the immune system may be beyond repair, at least today. Most researchers believe the best way to treat HIV disease is to take action early enough to prevent serious immune system damage, and thus prevent the risk of secondary, or "opportunistic", infections and severe damage to the immune system itself. Initiating therapy to slow or halt this damage is one important step you can take to prevent or delay progression of HIV-disease (getting sick). For the most part, this means getting on a treatment program before, not after, serious symptoms occur.

In addition to preventing damage to the immune system, acting directly to prevent or treat opportunistic infections (OIs) is also important. Preventative medications are available for some of the most common OIs.

Some information suggests that there are gender differences in rates of certain infections associated with HIV disease. Gynecologic manifestations are clearly unique to women. Compared to men, women may experience more frequent candidiasis (vaginal, esophageal, and oral thrush or yeast infections), herpes infections and types of cytomegalovirus (CMV) disease.

Table 1 lists the most prevalent OIs by gender. The information is from a large community-based trial programs database from 1990-1994. The table lists the major infections that occurred in the six months prior to death of 1,883 people living with AIDS, including 253 women. Although this information is dated, it illustrates some of the differences in infections between men and women.

All of the gender differences and the reasons they happen are not known. In addition to physical differences between men and women, there are psychosocial and lifestyle issues that may impact disease rates. For example, it may be that a large percentage of HIV-positive women in this database have a history of injection drug use, which has been associated with a higher incidence of bacterial pneumonia, shown in the Table. Although these statistics such are interesting, it is important to know they can only serve as sources to help guide your decisionmaking. They cannot tell you what infections you are at risk for. The more you know, the better able you will be to decide which therapies to use and when. Preventing OIs should not take a back seat to anti-HIV treatment. Planning your treatment strategy should include consideration of potential risks for OIs and preventative measures that can be taken. Project Inform hotline volunteers can help you through some issues to consider as you formulate ideas around your own strategy for managing HIV-disease, including prevention of OIs.

It is important to feel comfortable with a treatment strategy. If a clinician does not explain his or her thoughts in an understandable way, it is your responsibility to ask questions. (See Building a Doctor/Patient Relationship, available from the PI Hotline.) At a time when you are expected to alter your lifestyle to commit to a complex, multi-drug regimen, your doctor needs to be clear, comprehensive and forthright with the rationale and reasoning behind any therapy recommendations. In the end, it's your decision and you should make sure you have all the information you want. It is also important to participate in building a long-term treatment strategy that you feel comfortable with and empowered by.

There are several possible reasons why a drug may work differently in a woman than in a man. The issue of gender differences in medicine is not unique to HIV. Overall, the data that have been presented on gender analysis have identified differences in toxicity, side effects and blood levels of drug, but not differences in effectiveness of therapy. Perhaps the most striking study illustrating this thus far is a delavirdine (Rescriptor) + AZT study in which 19% (or 139) of the volunteers were women. In this study, the level of drug which accumulated in the blood of women volunteers was 1.8 times higher than the amount observed in men, even though both were taking exactly the same doses. Interestingly, this did not make a difference in the effectiveness of the drug. It is still unclear what caused this difference, however effects of hormone levels on drug metabolism (break down) has been one suggestion. This at least suggests that women may absorb drugs differently than men in some cases and that drug companies should be careful to watch for this effect.

In addition to higher blood levels of drug, some studies have reported increased or varied side effects associated with other anti-HIV drug use in women. A study looking at ritonavir (Norvir®), a protease inhibitor, showed that women experienced more nausea, vomiting and malaise (depression, fatigue, etc) than men. It's not that these side effects were unique to women, but rather they experienced them generally more than men. This may also be due to a metabolism problem caused by hormone levels, amount of drug or some other unknown variable.

Another obvious difference between men and women is their average weight. Some drugs work best when the dose given is partially determined by the weight of the person. It is unclear, for example, whether a 120-pound woman should be assigned to receive the same dose of potent anti-HIV drugs as a 240-pound man. Yet, this is exactly what happens. Little research has been done to determine the optimum dosing in women, or even in men of different weights.

Unfortunately, far too little is known about gender differences and their causes. For women making treatment decisions now, it is important to gather information about therapies. Discuss all therapies being used in a regimen, including complementary therapies (e.g. herbs and vitamins), with a clinician to make certain that there are no serious drug interactions or reasons not to consider a specific therapy. Be sure to monitor and report to your clinician any symptoms, body changes or side effects that you may experience. There may be steps, such as dose modification or treatments for symptoms, which may help with problems you are experiencing. Studies are being designed and as more women participate in clinical trials, more of these puzzling issues will be explored.

The use of hormone replacement therapies in both men and women for issues such as symptom management and weight maintenance have become common, even though there is little data from studies to guide such decisions. Hormones are chemical substances that the body secretes to help regulate metabolism, activity/energy level, reproductive capability and sex drive. There are many types of hormones. Estrogens and progesterone are the female sex hormones most commonly referred to. Testosterone is the most commonly discussed male sex hormone. All of these hormones are present in everyone, however, just at different levels based on gender.

Because hormones regulate many bodily functions, it makes sense that HIV disease, among other things, affects them and vice versa. For example, in men with advanced HIV-disease, testosterone levels are frequently deficient and replacement therapy is used to increase energy levels and libido (sex drive), manage depression and promote weight maintenance and gain. In women, reports of abnormal menstrual cycles, weight loss, gynecological infections, headaches and fatigue are also common and may be related to decreased estrogen levels.

In addition to general health issues affected by hormone levels, for women there are the added gynecological manifestations, menstrual cycle, and pregnancy issues that are clearly tied to hormone activity. Unfortunately, most of the conversations about hormone use and function focus on the use of hormone therapy as birth control. However, for many women living with HIV, pregnancy issues may play little or no part in their decision to use hormone therapy. Hormone replacement therapy (HRT) is used to regulate menstrual flow, to manage menopause or pre-menstrual syndrome (PMS) or to stabilize or reverse body composition changes. These applications, as well as the impact of HIV and the therapies used to treat it, have not been well studied thus far.

The occurrence and frequency of abnormal menstrual cycles and premature menopause in HIV-positive women have long been debated. Studies comparing menstrual cycle issues in HIV-positive and HIV-negative women have often produced conflicting results. Many doctors view abnormal menstrual cycles as a mere inconvenience rather than a serious medical condition and thus don't address them aggressively. However, one recent study reported that the use of HRT in HIV-positive post-menopausal women was correlated with longer survival. If this survival benefit is confirmed in other studies, hormone regulation may have much broader implications than previously assumed on the health and well being of women living with HIV disease.

Aside from the gynecologic implications of hormone levels, there are many unanswered questions about the relationship between hormone levels and the immune system, drug metabolism and body composition. Little is known about how hormone therapies commonly used by women interact with the many anti-HIV regimens currently being used. The few studies of oral contraceptives that have been done have only looked at how HIV medications affect the levels of contraceptives needed to prevent pregnancy or how the contraceptive affects the HIV medication blood levels. For instance, one of the protease inhibitors, nelfinavir (Viracept®), decreases the levels of ethinyl-estradiol (the most commonly used birth control pill) by 50%. Most doctors recommend that women trying to prevent pregnancy, therefore, increase their dose. However, many important questions have not been answered. For instance, is there a difference between naturally occurring estrogens and synthetic estrogens (like the birth control pill)? Will taking a drug like nelfinavir that decreases synthetic hormone levels also impact natural hormone levels? If yes, then what is the impact? And what, if any, are the risks of increasing the intake of these synthetic substances, even though the amount of estrogen in the system is being normalized?

Not only are there questions about birth control and hormone replacement therapy levels, but also the reverse. Which anti-HIV drugs are metabolized differently because of the use of hormone therapies? Since many of these questions remain unanswered, how do you decide to use hormone replacement therapy or hormonal contraceptives? Look for information at your local AIDS service organization or clinic (see Resource List, below). Talk with your doctor or health care provider. If you are experiencing abnormal periods (unusually heavy, light, irregular, or painful), or if you need additional contraceptive coverage, you may want to consider hormonal contraceptives. If you are menopausal or post-menopausal, you may want to consider estrogen replacement therapy. If you are experiencing body composition changes (weight loss, gain, or redistribution), fatigue, depression, decreased sex drive, or energy loss, then you may want to discuss checking your estrogen levels with your clinician to make sure you are not becoming menopausal prematurely. Be aware estrogen levels go up and down in a monthly cycle, so to get an accurate picture you will probably need to get at least 3 measurements (week 0,2,4). These are taken with a simple blood draw. Unfortunately, even if you get a normal measurement, it may not tell you whether or not to use estrogen replacement. An isolated set of numbers may not reflect what is "normal" for you. Some researchers suggest that rather than checking estrogen levels, clinicians should look at markers of pituitary function. Pituitary hormones, FSH (follicular stimulating hormone) and LH (luteinizing hormone), stimulate progesterone and estrogen.

There have been anecdotal reports that despite 'normal' estrogen levels on laboratory reports, some women have symptoms, including fatigue, improve after initiating hormone therapy. The problem with this is that the use of estrogen replacement therapy has been linked to an increase risk of breast and uterine cancers. On the other hand, estrogen replacement for post-menopausal women has been linked to a decrease risk of heart disease and osteoporosis (a degeneration of the disks in the spinal column that causes older women to be slumped over).

Overall, it is important to recognize the role hormones play in our everyday health and well-being. If hormone replacement therapy will reduce symptoms and improve quality of life without adding long-term risks or side effects, it is probably a viable choice. Discussing all your symptoms and body changes with your clinician may be one way to help identify appropriate therapy options for you. Remember, in most cases, it is easier to prevent illness or degeneration than to treat it.

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